Stress - This was written for Autism, but really,

Stress - something parents in general are all too familiar with. There is the physical stress from carpools, preparing meals, bathing, homework, shopping, and so on. This is compounded by such psychological stressors as parent-child conflicts, not having enough time to complete responsibilities and concern regarding a child's well-being. When a family has a child on the autism spectrum, unique stressors are added.

Sources of Stress for Parents
Deficits and Behaviors of Autism. Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). This may be a result of the exhibit. An individual with autism may not express their basic wants or needs in a manner that we would expect. Therefore, parents are left playing a guessing game. Is the child crying because he/she are thirsty, hungry, or sick? When a parent cannot determine their child's needs, both are left feeling frustrated. The child's frustration can lead to aggressive or self-injurious behaviors that threaten their safety and the safety of other family members (e.g. siblings). Stereotypic and compulsive behaviors concern parents since they appear peculiar and interfere with functioning and learning. If a child has deficits in social skills, such as the lack of appropriate play, stress may be increased for families; individuals lacking appropriate leisure skills often require constant structure of their time, a task not feasible to accomplish in the home environment.

Finally, many families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these issues and behaviors are physically exhausting for families and emotionally draining. For families of children on the autism spectrum this can be a particular challenge. Scheduled dinner times may not be successful due to the child's inability to sit appropriately for extended periods of time. Bedtime routines can be interrupted by difficulties sleeping. Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.

Reactions from Society and Feelings of Isolation. Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger's food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children on the autism spectrum may experience a sense of isolation from their friends, relatives and community.

Concerns Over Future Caregiving. One of the most significant sources of stress is the concern regarding future caregiving. Parents know that they provide their child with exceptional care. They fear that no one will take care of their child like they do. There may also be no other family members willing or capable of accomplishing this task. Even though parents try to fight off thinking about the future, these thoughts and worries are still continually present.

Finances. Having a child on the autism spectrum can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. The caregiving demands of raising a child with autism may lead one parent to give up his or her job, yet financial strains may be exacerbated by only having one income to support all of the families' needs.

Feelings of Grief. Parents of children with autism spectrum disorder are grieving the loss of the "typical" child that they expected to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and their family. The feelings of grief that parents experience can be an additional source of stress due its ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (e.g., birthdays, holidays, unending caregiving) trigger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing.

Sources of Stress for Siblings

There are also potential sources of stress for siblings. Not all siblings will experience these issues, but here are some to be aware of:

Embarrassment around peers. Jealousy regarding amount of time parents spend with their brother/sister
Frustration over not being able to engage or get a response from their brother/sister
Being the target of aggressive behaviors
Trying to make up for the deficits of their brother/sister
Concern regarding their parents stress and grief
Concern over their role in future caregiving
Sources of Stress for Grandparents
Like parents, grandparents can grieve over the loss of the "typical" grandchild they expected to have. In addition, grandparents are concerned about the stress and difficult situations they see their children experiencing.

Many grandparents want to help but they often face two obstacles. First, most of them do not have the training in behavior management that is required to handle behavioral episodes. They may offer advice related to their experiences, but these may not be successful for individuals with autism. This can cause parents to become frustrated when they perceive the grandparents as not understanding their situations. Second, grandparents may not be physically able to manage the behaviors of individuals with autism. Grandparents just want to play with their grandchildren and "spoil" them.

Unfortunately, at times it may seem that a diagnosis of an autism spectrum disorder gets in the way of these desires. In reality, through understanding, experience and acceptance many learn to relate to the child, understand their differences, celebrate their strengths and gifts, and gain insight into the unique situations involved with parenting a child with autism and find that children on the autism spectrum are just as easy to love and spoil as any other grandchild.

What Can Be Done To Address Family Stress
Luckily, family members can take action to address the stress that they experience. Accessing services or doing any additional tasks can be overwhelming, considering what parents are already dealing with on a daily basis.

However, remember that it is only by taking action that challenges can be tackled and progress toward solutions made. Below are some suggestions to get started with in enhancing family functioning.

Take Time For Yourself and Other Family Members.
In order to avoid burnout, parents must make time for themselves. Parents often respond to this suggestion by saying that they don't have any time to do that.

However, you must keep in mind is that even a few minutes a day can make a big difference. Some parents do such simple things for themselves such as taking the time to apply hand lotion or cook their favorite dinners to make themselves feel better. Parents, just like individuals with autism, need rewards in order to be motivated. Parents who have children on the autism spectrum have even more of a need to reward themselves, because parenting their child can be frustrating and stressful.

In addition to rewarding themselves, family members need to reward one another. Spouses need to acknowledge the hard work that each is achieving. Also remember to thank siblings for watching or helping out their brothers and sisters. It is also important that spouses try to spend some time alone. Again, the quantity of time is not as important as the quality. This may include watching television together when the children are asleep, going out to dinner, or meeting for lunch when the children are in school.

Families may also want to occasionally engage in activities without the individual with autism. This may include mom, dad and the siblings attending an amusement park together. Often families feel guilty not including the individual with autism, but everyone deserves to enjoy time together that is not threatened by the challenges of autism.

Network With Other Families Affected by Autism or Another Disability
It gives us comfort to know that we are not the only ones experiencing a particularly stressful situation. In addition, one can get the most useful advise from others facing similar challenges and using similar services and supports. Support groups for parents, siblings and grandparents are available through educational programs, parent resource centers, local chapters of the Autism Society of America and Developmental Disabilities Offices. In addition, there are now online supports available for family members. You can locate these sources of support and many other services in your area by using ASAs on-line referral database, Autism Source, at http://www.autismsource.org/.

I can't thank you enough for posting this!!! Basically, this could have been written about me. The part about feelings of grief and "chronic sorrow" really hit home. I've been feeling this way for a long time and just try to keep these feelings buried. I like the term, "chronic sorrow." It is hard to be truly happy about anything when under constant stress from the strains of raising one Aspie and another Aspie who is also bipolar. Thank you for making me feel like I'm not crazy even though my environment definitely is.

I'm in a rush right now - Have lots of errands to do and have to take my difficult children with me. Later today I hope I have a chance to print this post.

My eyes are teary as I'm writing this. It helps so much just to know I'm not alone... Thanks again Janna. WFEN

I don't know how others feel, and of course I've never dealt with a physically visible disability with my child, but sometimes the "invisibility" of autism and other disorders that our children have seems to compound my stress. People judge quicker and harsher when they can't "see" a reason for our kids behavior.

A year or so ago, the Wall Street Journal had an article about the impact of autism on the work force. They interviewed a man who was a fairly high manager in a company. When his son was first diagnosed, his company was very considerate and helped immensely. Then one day, a few years into it, his boss asked him "So, when is the crisis going to be over?" This man was eventually demoted and later fired. But that statement has stuck in my head for. With disorders like this, for many, the "crisis" will never be over.

I was trying to explain to my mother in law the difference between an acute problem and a chronic one. She keeps expecting us to just get over it already. This was well written. I'm sending a copy to her today. Thanks.

Janna,
Great article! Like you said it really could be for any disorder. I really like the completeness of the article in addressing siblings and grandparents. I think easy child has had to deal with an amazing amount of chronic stress due to difficult child. Thanks for posting this.

This is so true. As a teacher of students with autism, I always feel such sorrow for the parents. For the students who are serverely autistic, who are violent, this behavior never ceases. One parent of ours always says she wants to jump off a building evey time we see her. I want to hug her, I love her child, and understand. It's isolating, and they never get a break, a couple of days off, or even a someone who can watch the child while they run to the store or something.